This is a summary of how steroids have treated me over the past year.
I began 2018 on 4mg pred, but with daily nausea, headache and extreme fatigue. After discovering that I had adrenal insufficiency, my endo suggested increasing to 5mg, but before that experiment had gotten very far, I developed myositis.
After a variety of tests, by June, I was on 25mg methyl pred daily.
With my CK levels dropping sharply, in September I began to taper. I'm now on 8mg daily.
On the raised steroid dose, my perpetual nausea vanished immediately. After 3 months, my CK levels had dropped to near normal and after 5 months or so, my legs had strengthened and I lost the pins-and-needles sensations. On 8mg I have not yet had the return of day-long nausea or headaches. I seem to have avoided steroid-induced diabetes (so far!)
I experienced no improvement in fatigue or effort tolerance - and remain largely housebound. I have put on over 15kg in weight and have the characteristic "Cushingoid" moon face, hunchback and central fat deposition. My heart continues to cause worry, with a resting heart rate of around 100 bpm. I had several months of vicious heartburn.
STEROID LEARNING: Steroids seem to have helped with the inflammation and muscle damage of myositis. Even a big increase does not help me with fatigue. They are necessary to avoid the generalised nausea and headache that come with adrenal insufficiency. Above 12mg they give me terrible heartburn. Below 12mg, it seems to take at least a month to stabilise on each 0.5mg reduction (sweating and flushing, shaking, nausea etc are typical signs of failing to adjust). Some experimentation with dose scheduling is helpful. eg to avoid morning migraines, I have to take an evening 1mg dose no earlier than 7PM (this is not the advice usually given on steroid dosing). I also take a small dose of hydrocortisone on waking. Many endocrinologists know surprisingly little about steroids.
If you have been, thanks for reading x